Norfolk, Norwich and Waveney Branch



Branch support services



The Norfolk, Norwich and Waveney Branch offer a range of support services. If you would like to know more about how we may be able to help you or someone you know, please do not hesitate to contact us.

So many initials – AV, CSN, ASC, SDM. Who should I turn to for help?


What follows is an attempt to answer the question.


Association Visitors (AVs) act as the main contact for people living with MND – this includes the person with MND, their family and carers – on behalf of the Association. After diagnosis, and from the time you have agreed that you would like to hear from an AV, they keep in regular contact by phone, email or visits. They offer confidential emotional support and accurate information to enable people to make informed choices.


What they can do:

  • Explain the support and services the Association can offer, including the benefits of becoming a member
  • Help identify problems as they arise and explore how these might be managed, outlining the sorts of options available and how to access them
  • Develop and maintain relationships with the local branch or group
  • Refer the family for support from a Care Service Navigator as and when required

Care Service Navigators (CSNs) are usually people who have worked, or are still working, as health and social care professionals. They are likely to have local knowledge of services and support and an understanding of how to access it.


What they can do:

  • Support people affected by MND to navigate health, social care and other statutory services, third sector support and to encourage the provision of services that are designed to meet an individual's needs
  • Support carers by promoting carers' assessments and making them aware of carers' organisations and services
  • Support people to get the best out of personal budgets and other initiatives
  • Support and signpost health and social care professionals to specialist training, education and information resources that will help them in their professional work with people living with MND

Why two roles? The role of an AV is designed to be long term, the CSN provides short term and task focussed support to people living with MND, their families and their carers.


The MND Association provides training for both roles, and ongoing support from the Area Support Coordinator. It must be noted that AVs and CSNs are volunteers and as such, these services can only be offered where they are available.


Area Support Coordinators (ASC) and Senior Development Managers (SDM) are employed by the Association.

The Area Support Co-ordinator (ASC) focuses on supporting, managing and leading volunteers to ensure that the best possible support is provided to people affected by MND, resolving local issues and developing and maintaining local relationships with Health & Social Care Professionals. Our ASC, Liz Cooper, works closely with branch volunteers and support volunteers, including AVs. She covers Norfolk, Suffolk and Cambridgeshire. The best way to contact her is via Connect.


The Service Development Manager (SDM) focuses on improving and developing services to ensure that better outcomes are achieved for people affected by MND, and on managing the resolution of complex issues for people with and affected by MND. Our SDM, Scott Maloney, covers the East of England.


Support Meetings


Open Meetings are held three times a year. These are open to anyone with an interest in MND. They are an opportunity for meeting, socialising and sharing information and ideas. A meal is provided free of charge. We always provide a vegetarian option as well as a meal that may include meat, though if you have food allergies or other specific dietary requirements please use the Contact Us page. We try to provide a meal that is easy to manage for those with MND, however, should you have swallowing difficulties please advise us of your needs at least three weeks before an event so that she can contact the caterer to discuss what might be possible.


Covid-19 update. Our open meetings for the rest of 2020 will take place online.


We always aim to find a speaker to give a short talk on an issue of relevance. Previous talks have included Research and Palliative Care, we are always open to suggestions if you think there may be a topic we should be covering. In addition to committee members there is usually a local Health and Social Care Professional, which may be the MND Coordinator, Respiratory Physiotherapist, one of the Consultant Neurologists, or a neurological nurse specialist depending on their availability. We are often joined by one of the volunteer Care Services Navigators.


Pre Covid-19 Coffee Mornings were held twice a month in each of two venues - except in December. These tend to be smaller more informal functions, at easily accessible venues, with the intention that people can drop in for as much or as little time as they like either to socialise, exchange ideas or ask for specific advice. There is no agenda, but hopefully a chance to sit and chat over a cup of tea or coffee. Current carers, people who have been carers and people with MND are very welcome to attend. If people feel this may be of interest they can just come along on the day. We hope that these will resume in the future when the Association advises us that it is safe.


The venues we usually use are Notcutts Garden Centre cafe in Norwich, and Cherry Lane Garden Centre in Fritton near Great Yarmouth, but Covid-19 has meant that face to face meetings are on hold. Please see the upcoming events section for details of the next planned coffee morning.


Covid-19 update. We have been advised by the Association that we should not hold face to face support meetings for the foreseeable future, instead we will hold these online using Zoom. In order to protect the security of these meetings please contact if you would like to be emailed a link to the next meeting.




The branch can help with the sourcing, supply or loan of specialist equipment. Recent requests to the branch have included help towards funding a powered wheelchair, a contribution towards the cost of respite care, contribution to the cost of home adaptations, funding for software to enhance communication, provision of an iPad to aid communication, installation and rent of a stair-lift, rent of a battery pack to power a non-invasive ventilator. In all that we do we are guided by the following principles from National Office: an MND Support Grant may be awarded where a need has been assessed by a health or social care professional and /or support would improve the quality of life and where one or more of the following applies:

  • Equipment or a service provision is not the responsibility of a statutory service
  • Delay in provision by the statutory services is unacceptable based on assessed need
  • As a short term interim measure while awaiting provision by statutory services.

We would like to thank all those who raise money for us to help fund these vital provisions.